When Charice Fort and her 12-year-old son, Caleb Thurman, travel to Washington, D.C., June 18 – 20, they hope to tell Ohio lawmakers that safeguards like Ohio’s Bureau of Children with Medical Handicaps (BCMH) have made all the difference in their life since Caleb was diagnosed with several chronic illnesses.

Charice and Caleb, an 8th grader at Akron’s Litchfield Middle School, will represent Akron Children’s Hospital and be the voice for all of Akron Children’s patients during the Children’s Hospital Association’s annual Speak Now for Kids Family Advocacy Day.

After having terrible stomach pain and severe gastrointestinal symptoms for a year, Caleb was diagnosed in 2007 with Crohn’s disease, which causes inflammation of the digestive tract.

While the exact cause isn’t known, researchers believe Crohn’s is caused by a combination of genetics, environmental factors and an abnormal immune response.

Caleb comes to Akron Children’s for regular infusions of a medication that has greatly helped manage his symptoms.

The arthritis has taken a toll on his legs so he wears braces to keep his ankles and knees straight, while also coming to the hospital several days a week for physical therapy.

As Caleb’s visits to pediatric specialists increased, Charice, a single mother who works as a medical coder at Summa Health System, soon became overwhelmed with mounting bills. Caleb’s leg braces alone were $1,900 each, and his specialized care put a strain on the family’s resources despite Charice’s private insurance.

Charice was thrilled when Dr. Mary Toth, a pediatric rheumatologist, began coordinating Caleb’s care. Another huge relief came when Caleb qualified for BCMH, a health care program of the Ohio Department of Health.

“BCMH covers all of Caleb’s medical costs above what my insurance through Summa covers,” said Charice. “If this program did not exist, my next best option would have been to quit working and qualify for welfare. But I like being productive. I like getting up and going to work.”

Meanwhile, Caleb is now feeling well enough to play baseball in the West Akron Baseball League, play the clarinet and sing in his school choir.

According to Charlie Solley, government relations director for Akron Children’s, the purpose of the trip is to give legislators a chance to meet people affected by healthcare policy decisions.

Issues that impact children’s hospitals and their patients include cuts to programs that fund medical education to train tomorrow’s doctors, ongoing concerns about drug shortages, and funding for safety net programs like Medicaid and BCMH.

“The journey I have been on has not been an easy one to travel,” said Charice. “No one would choose this path but financial assistance needs to be in place for families who find themselves in a similar situation.”

“You represent so many,” said Bernett L. Williams, vice president for external affairs. “Your voice is the voice of many.”